Posted , 3 users are following.
I was originally diagnosed, a year ago. I had several second and third opinions. I believe the mass, has been there for six years. I only can imagine, how everyone, is feeling. This has totally changed my life, you have times and you are so tired and you begin, to begin to feel empty. It is very important to stay positive or try.
0 likes, 5 replies
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scott51787 Lora_Ann
Posted
Hi Lora Ann, I was diagnosed myself with igG4 in March. It has been a total life changer. In my case it attacked my kidney's throwing me into stage 5 kidney failure. My Dr.'s currently have me taking 60mg of Prednisone daily to try and suppress it and see how much kidney function I can get back to avoid a transplant. I understand what you're feeling with the fatigue and emptiness. But like you said, stay positive and keep fighting.
Lora_Ann scott51787
Posted
LeShawn Lora_Ann
Posted
Hi took me 5 years to get a diagnosis. I was officially diagnosed in December of 2017.. It settled in my chest, causing breathing issues..aggravating my Asthma and swelling of my face and head leading to sight problems and severe headaches. Lymph Nodes and glands. Started with prednisone, then moved to infusions of Ratauximed.. I am trying to stay positive..but when it "flares" its hard. Being so unknown...people can be pretty condescending when I don't feel well.
Lora_Ann LeShawn
Posted
I am so sorry to hear, my mass was found in 2012 and on my spine and the outer lining of my lung. I was officially diagnosed in 2017, as well. I started on prednisone and it did not work for me. I also had rituxan. It didn't work and then imuran and prednisone again.It sounds strange, nobody believes me about the flare up. I have a ct on my stomach, pelvis and chest. Trying to stay positive. It felt so goid to hear from you. You are so right about flare ups, its horrible. I hope to hear from you again.
LeShawn Lora_Ann
Posted
Definitely! I am in a flare right now. Left side of face is swollen, the strange rash, exhaustion, joints sore and stiff. But i haven't had treatment since January. My Doctor needed to see what my "threshold " is between the flares. I don't go back until June.